I have been home from rehab for just over two months and I’m generally doing ‘well’ and am happy with the slow but steady progress I am making.
I recently had several neurological tests done to determine the cause and severity of the ‘neuropathy’ that I was experiencing in my hands and feet still that we assumed was a side effect of the weird trial drug for my CMV.
I explained to the neurologist how strange and fast everything happened. How I went from walking right before I fell down and ripped my leg open to not even being able to sit up, stand, write or hold on to anything not even ten days later. I told him how long rehab took, how confusing it was that even though I only had surgery on one leg, neither of them worked at all. I told him how hard certain things still were for me, and how even though I’m getting strong I still don’t feel ‘steady’.
He found multiple abnormalities both in the nerves and muscles, a complete lack of reflexes and an overall profound weakness that is not achieved via normal deconditioning. The testing showed that unbelievably, I was in the recovery stage of Guilain-Barre Syndrome.
(From Mayo Clinic) Guillain-Barre (gee-YAH-buh-RAY) syndrome is a rare disorder in which your body’s immune system attacks your nerves. Weakness and tingling in your extremities are usually the first symptoms. These sensations can quickly spread, eventually paralyzing your whole body. In its most severe form Guillain-Barre syndrome is a medical emergency. Most people with the condition must be hospitalized to receive treatment.
The exact cause of Guillain-Barre syndrome is unknown. But two-thirds of patients report symptoms of an infection in the six weeks preceding.
There’s no known cure for Guillain-Barre syndrome, but several treatments can ease symptoms and reduce the duration of the illness. Although most people recover from Guillain-Barre syndrome, the mortality rate is 4% to 7%. Between 60-80% of people are able to walk at six months. Patients may experience lingering effects from it, such as weakness, numbness or fatigue.
which was likely triggered by my recurring CMV infection sometime shortly before my fall. The ‘tingling/numb fingers and toes’ I had been complaining about prior to the fall were likely the first symptoms but we had assumed it was caused by the trial drug I had just started taking. Guillain-Barre Syndrome
In an absolute complete fluke, the timing of the onset of the GSB with my fall meant that for the first week I was in the hospital things progressively became worse and I could no longer really move. We assumed that my previous de-conditioning + Pain meds + not moving while my leg healed for a week was the cause- but eventually I could not even roll over and needed two nurses to help me move in bed at all. This is when the insane, unbelievable miracle took place.
Because of my transplant, my immunoglobulin levels had not returned to normal so I was receiving IVIG plasma infusions every month or so depending on my levels. I was due for another IVIG Infusion while I was at Lakeridge so they worked with PMH to make it happen. Guess what the treatment for Guillain-Barre Syndrome is? IV f**ing IG.
So the normal dose of IVIG is 5 days but I only received one because that is the dose for Immunoglobulin deficiencies. That’s likely why unfortunately even though it made the overall outcome less severe, the GSB continued to progress for another two weeks or so before it plateaued and seemed to not get worse but also not get better.
When they first decided to move me to rehab because I couldn’t stand, I was still hooked up to a catheter. I tried to explain that my left hip was weak because of the fracture and necrosis and my right leg was in a splint so of course it would be hard to stand…. but I couldn’t even budge. It didn’t make any sense to me. I was so confused. How had I gone from walking with a walker a few weeks before to being unable to stand, grab or lift anything?
When I moved to rehab it was overwhelming because I felt like the therapists thought I should be able to do so much more than I could and I was frustrated with how little I could do. The first time we tried to stand up at the parallel bars I completely fell apart. I tried over and over to stand but it felt like nothing was happening. I was tensing my muscles and pushing as hard as possible and barely budging. It took two people to lift me out of the chair for the first time on to my feet and they had to hold me up the whole time while I held on to the bars.
My legs felt like Jello, like I had never ever walked before in my whole life. I couldn’t feel my feet so I had no idea where I was stepping. My body felt like it weighed a thousand pounds and simply walking 4 steps with two people’s help left me so winded I thought I was going to pass out. We kept working and for the first two weeks it felt like we were making no progress at all. The Intense burning, pressure, aching pain in my hands and feet was so unrelenting it was nearly impossible to focus on anything else or sleep.
When it became apparent that way more than my leg needed intensive rehab we started working with my hands and arms, and doing small finger work and grip work to try and build some strength and coordination back up in my hands. I spent this ENTIRE time, chastising myself and beating myself thinking that I had been ‘too lazy’ when I was in the hospital all summer and was angry that I had ‘let myself become this weak’. To look back at it now It’s insane.
I knew something was wrong and I kept saying to people, that It didn’t make sense how weak I was, that the neuropathy shouldn’t have stopped my hands from working. Unfortunately because of my transplant, the surgery, the drugs I was on, my kidney problems, there were just so many more sensible explanations for what I was experiencing than Guillain freaking Barre, so we completely missed it until now.
The doctor told me that it can come back so I will have to pay attention to my level of strength and numbness and report any negative changes immediately. He said usually around 6-12 months any feeling that will come back has come back so whatever is still numb at that point will likely stay that way. I also may experience lasting weakness that cannot be resolved by strength exercises and may never move beyond needing a walker or a cane. My hands are only numb in the finger tips still, but about 80 percent of my feet continue to be numb. I honestly cannot believe that I got Gullain-Barre and that a totally random fluke IVIG infusion probably prevented me from being much more immobilized than I am now… I swear you just can’t make this shit up.
So that was crazy news. I also had a kidney biopsy, as I continue to have kidney difficulties. My creatinine has been between 250-300 for quite some time now and my GFR continues to hover around 20. The Biopsy found advanced Interstitial fibrosis with severe chronic interstitial inflammation. They found severe tubular atrophy, severe arteriolopathy and severe arterial sclerosis. I am awaiting a follow up with my nephrologist but my understanding is that this places me in Stage 4 Chronic Kidney Disease with a likelihood of progression to Stage 5 (Failure) and an eventual requirement of dialysis or transplant. I’m kind of hoping I’m wrong but… don’t have a great gut feeling.
The truth is even though I’m ‘well’ and I was just starting to feel like maybe in 2021 things would finally go back to normal for me- I’ve been pretty unwell since last summer. Lots of things over the last six months that again, were easier to write off as side effects or symptoms of drugs or smaller, more sensical things have now ended up clearly being signs that my kidneys were not functioning well.
I continue to have intense itching, in some places it’s very isolated and so bad that I usually tear my skin open trying to relieve it. It generally results in itchy blisters and scabs that look like acne all over my face and chest. I’ve barely been able to eat for about 7 months. I’ve lost 80 pounds since last May. I am constantly vomiting, especially in the mornings and have extremely restless legs when I try to sleep that are so bad I usually spend 30-60 minutes ‘fake swim kicking’ in my bed to try and tire them out. Often they wake me back up in the middle of the night and it’s hard to go back to sleep. I usually don’t go to the bathroom more than once or twice during the daytime and then go 8000 times at night. It’s hella annoying.
Anyways I suppose I will update further when I talk to my nephrologist. For now I’m going to keep living in this insane limbo world that I’m getting pretty used to haha… I’m trying to keep a positive and open mind but it’s getting really hard and tiring to continue this seemingly perpetual shitshow of problems. I’m also a bit sad because just last week I finally started feeling a bit mentally clearer, and my clinic blood labs looked pretty good and I felt like I was finally starting to be move past everything. I survived a million ad one ways to die and now I could start working towards shedding that overwhelming fear and anxiety and start creating a path and a future for myself again and now I just feel like I’m kind of back at square one….
Thank you for reading my always long and probably boring blogs. Thanks for still being my friends and supporting me. I know it’s been three years of craziness and I feel like it’s not over yet and I am so, so sorry for that and I just am so grateful that my friends, family, and you, reading this right now, have stayed the course with me. It’s made all the difference to be able to share these hard and challenging experiences with you, even if you couldn’t understand what I was going through, you could at least understand that I was going through something that needed love and support and have continued to give so much of it, so selflessly for so long, even in the midst of a worldwide pandemic. So thank you. Forever <3